Community divided on action needed for long COVID in disability sector

Long COVID could be a mass disabling event, and people with disability are sounding the alarm about how this could impact the sector and society more widely.

Australia is in the grip of a new COVID wave, with a veritable party mix of variants floating around in the population.

And almost three years into the pandemic, we now know much more about the disease’s long-term impacts on the body.

Long COVID, as it’s known, is the persistence of symptoms for longer than 12 weeks after the initial infection.

According to the World Health Organisation, around 10-20 per cent of people who catch COVID may experience long COVID in the weeks, months and even years after their initial infection.

In the US, millions are unable to work due to their symptoms, and long COVID has been called a “mass-disabling event”.

But in an exclusive interview with Pro Bono News, NDIS minister Bill Shorten said he doesn’t expect Australia to experience a wave of disability triggered by long COVID.

So as fears grow overseas, what is Australia doing to prepare for this?

Long COVID in Australia

A few months ago, the federal government announced an inquiry into long COVID.

Among its terms of reference is a consideration of “the health, social, educational and economic impacts in Australia on individuals who develop long COVID and/or have repeated COVID infections, their families, and the broader community, including for groups that face a greater risk of serious illness due to factors such as age, existing health conditions, disability and background”.

Within the disability sector, some have already sounded the alarm about long COVID.

Head of policy at Advocacy for Inclusion, Craig Wallace, said he holds grave concerns about the disease.

He had hoped to see some funding for the condition in the federal budget in October, but was left disappointed.

“Given it is shaping up to be a leading cause, if not the leading cause, of disability in Australia over the coming decades, that requires a stack of interventions. We know from bitter experience that early intervention is key and ignoring emerging causes of disability only leads to more pain, suffering and also costs for systems like the NDIS,” he told Pro Bono News.

“There are going to be people that need lifelong disability supports as a result of this.”

Advocacy for Inclusion has put in a submission to the government’s inquiry.

Wallace said already, the organisation is hearing from people who are sick, and who are trying to negotiate leave or flexible working arrangements “because they’ve acquired a disability”. People are struggling to access medical support, he said, due to the stress that the health care system is under thanks to ongoing COVID waves.

And those left with long COVID are asking what the disability supports for the condition will look like, he added.

“I can say, we’re certainly seeing a bit of an indication of the tidal wave to come of people that are going to need disability support, advocacy support to maintain employment, support to access the community and to access the health system because they are sick.”

Ringing alarm bells

Wallace has a wishlist of things that would help in the face of that wave.

Chief among them is recognition of long COVID as a disability, so that people can access disability and income support and the NDIS.

The NDIS will itself need support to handle those that enter the scheme.

More research into long COVID is also needed.

“We need specialist diagnostic clinics around the country, noting that something like this tends to be a multi-system disease with neurological issues, pain issues, cardiac issues, acquired brain injury, as well as respiratory issues,” he added.

“We need integrated treatment centres that are going to support people to get all of the support that they actually need and arrangements which enable people to recover all their maintaining employment going forward for those people that won’t fully recover.

“And we need to be looking to the actions of countries overseas that have been through this and perhaps been scarred by it.”

He also wants to see greater action to help Australians avoid COVID infections and reinfections.

And, crucially, he said the already-stretched disability sector will need help.

“Nobody has sort of come to us, despite us raising this pretty consistently, and said, what extra support do you need to provide advocacy and support and equipment and all the rest of it to the people with disabilities who might need one?”

“Our sector is going to have to step in and provide some of that support where government doesn’t. Now, that is really, really difficult when we are already stretched,” he said.

“We’re ringing the bell. We’re ringing an alarm bell for the disability sector.”

“It doesn’t feel right”

Mary Mallett, CEO of Disability Advocacy Network Australia (DANA), shares Wallace’s concerns and says information from the government and public health officials about long COVID is “not easy to find”.

“In the disability sector, what I would say we are worried about is the lack of information, the fact that it’s not being shared widely. We see from information… from overseas, from the UK or the US in particular about the numbers of people, the percentage of people who develop long COVID. It’s not completely clear, but somewhere between five and… up to 20 per cent of people who get COVID can then go on to get long COVID,” she said.

She said data on Australia’s long COVID cases isn’t really available.

“It feels like the general public is being weirdly kept out of the information loop. And what this will all mean for the disability sector is that if a percentage of the population who do get COVID then go on to have long term health problems… [they] are likely to become part of the disability community over time,” she said.

“Our concern about long COVID is that there are a few long COVID clinics now that have been set up in a few of the major hospitals. But that’s not going to be sufficient to deal with the numbers of people who are likely to experience long COVID. So where are these people? Where is the expertise in the medical system to support them? Will they be considered to be eligible for the NDIS if they need disability support?”

In previous instances of public health, Mallett said, the government has led the way: think bans on smoking indoors or rules around seatbelts, for example.

“It is odd and a bit hard to understand why governments have backed away from implementing rules about COVID. It doesn’t feel right,” she said.

Politics divided

NDIS Minister Bill Shorten told Pro Bono News that although he believes in the science of COVID, he doesn’t believe a “big wave” of people with long COVID will flood the NDIS.

“I take long COVID seriously and it can have some very debilitating effects. But I think it’s too soon to determine the long term outlook for people experiencing prolonged symptoms,” he said.

“For the purposes of access to the NDIS, I think we will need further work to be done to determine whether long COVID results in an assessment of substantially reduced functional capacity.

“My mind is not closed on the question. But I certainly think it’s early days to start making definitive predictions.”

Greens senator Jordon Steele-John said he had been approached by people with worries about long COVID.

“What I’m sensing in the community is a real disappointment that this government has so far really completely failed to support many Australians through long COVID’s extensive impacts,” he said.

He’d like to see the conversation in Australia grounded in an understanding of how serious long COVID can be for some people, particularly in light of how other governments around the world, including in the UK and US, have responded with funding and research.

There are some areas of immediate support that can be provided to people with long COVID too, Steele-John said, including federal support for long COVID clinics and the establishment of a clinic in every state and territory.

“The feds, in our view, also need to be looking at making it easier for people with long COVID to get health care, which they may need for free under Medicare, for example, new MBS items to enable people to have longer primary care sessions with GPs or allied health professionals, and then an increase in funding that Australia is allocating towards long COVID research,” Steele-John continued.

“We’ve got an opportunity to be a global leader in the area of long COVID research — if we put the funds in and catch up with where a lot of other countries are in this space.”

The research should also look into the stigma that surrounds post-viral illnesses like long COVID.

“While an inquiry is all well and good, this is not enough,” Steele-John said.